HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 06-18-2006, 07:37 PM   #1
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Unhappy Losing my med onc - bummed!!!

On top of my other problem lately, I am losing my wonderful Medical Oncologist. He is pulling up stakes and leaving the misty woods here. This is SO upsetting, as I have been with him since 2000, and have every confidence in his ability to work with my body to keep my cancer at bay. Now, I am faced with the problem of accepting another doctor that I do not know at all. He is the top of the scale here, and there is no one else like him.
I think my plan of action is to set up a consultation or meeting with one that has been recommended before my July appt with the regular doc. This way I can let him know if I am feeling good about that change, or have time to try an alternative before he leaves here.

If I was in active treatment, it would be worse, as it is for some of my friends who are. Some of us are sticking together and sharing information on the other docs who would be available.
Funny that I had a premonition about this earlier this year - that my med onc was thinking about a change. He is also a professor here, as are all my docs.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 06-18-2006, 09:48 PM   #2
karenann
Senior Member
 
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
Steph,

My med onc is leaving, too. I have only been with him for 18 months, but I just love him and I am very sad to see him go.

Karen
karenann is offline   Reply With Quote
Old 06-18-2006, 10:28 PM   #3
Lolly
Senior Member
 
Lolly's Avatar
 
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Steph, I really sympathize with you. I know I'd feel really lost if I had to change oncs as I consider myself very lucky that our small burg has someone of his caliber here. I hope you find an onc you trust and have a smooth transition.

<3 Lolly
Lolly is offline   Reply With Quote
Old 06-19-2006, 02:18 AM   #4
RhondaH
Senior Member
 
RhondaH's Avatar
 
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
Smile Good Luck Steph....

I TOO have wondered this as my onc is now head of the cancer center for the largest hospital on this side of the state ( I often talk to my onc nurse that I'm afraid he is spreading himself too think and will give up his practice, but she reassures me NO). Once a good relationship is established, this person is just like family and is IRREPLACABLE (especially when I hear what others have). Take care and Good luck.

Rhonda
__________________
Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
RhondaH is offline   Reply With Quote
Old 06-19-2006, 05:58 AM   #5
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306
Yikes! This would be just devastating to me... My onc who supports all of my feelings and KNOWS what I'm about. My onc who 'designs' treatment protocals just for me...because I ask him to...

oh Steph. Your plan does sound like the best idea when having to deal with this. But sure wish you were not in the position to begin with...

xoxoxoxpattyz
pattyz is offline   Reply With Quote
Old 06-19-2006, 08:12 AM   #6
Monique M
Senior Member
 
Join Date: Jan 2006
Location: Birmingham, AL
Posts: 43
We moved approximately 1 year after my diagnosis. I trust my onc so much that I travel 8 hours round trip to stay under his care. So I can really sympathize with you.

Peace and Blessings,
Monique
__________________
Monique M

Birmingham, AL
Monique M is offline   Reply With Quote
Old 06-19-2006, 10:12 AM   #7
Sandy H
Senior Member
 
Sandy H's Avatar
 
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
I know this is a very difficult time for you but I am sure you will find someone who will take good care of you as you know what to look for. I am loosing my surgeon who is retiring, and doing outdoor guiding!! She is loved by all here and have yet to hear of any complaints of her not being liked. She lives for the outdoors and who knows may end up in your area as she is a pilot, registered guide, and all the rest that goes along with the outdoors!! Good luck in your search for an oncologist but remember you are in an area, as I understand, has some of the best not like in Maine! If that was me I would have to take what they gave me, move or travel for miles. Good luck sometimes the best is yet to come, hugs, Sandy
Sandy H is offline   Reply With Quote
Old 06-19-2006, 10:29 AM   #8
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Ow, ow, ow.... I'm glad you got through your most recent challenge, Steph, and am sorry you have had to. As usual, you have a game plan already in the works to try to find the best possible replacement even though it is not always simple. I agree with Sandy; close access is one of the best things you have going for you and I know you will make the most of it. Will your current onc be available to you for a second opinion if at some point you feel you really need one?

A.A.
AlaskaAngel is offline   Reply With Quote
Old 06-19-2006, 12:25 PM   #9
juanita
Senior Member
 
juanita's Avatar
 
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
My onc isn't leaving, but my nurse is. she's reaaly good at hitting veins and has always sat down and talked to us when it's slower in the office.
juanita is offline   Reply With Quote
Old 06-19-2006, 01:56 PM   #10
Barbara H.
Senior Member
 
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
Red face

Steph,
I know how you feel. I have been with my oncologist for 8 years and now he is going to the satellite hospital of Dana Farber. I can still see him, but only on Wednesdays, and that is the day he wants me to receive my treatment. I feel that the relationships that we build with our onclologists are so important considering the seriousness of our disease. I hope that you will find someone you feel comfortable with but it could take some time. You might be fortunate, because I connected to my neurosurgeon immediately.
Good luck,
Barbara H.
Barbara H. is offline   Reply With Quote
Old 06-19-2006, 06:13 PM   #11
Berta
Senior Member
 
Join Date: Sep 2005
Posts: 64
Steph: i know how hard adjusting to a new onc can be. Mine left during my chemo and I have had rent-a-docs ever since. I've had so many I don't remember them all. I live in rural Southern Indiana. However, i have found that its the nurses that really stay on top of stuff and provide for the continuity of care, at least what there is and the docs are all obligated to follow protocols as set by the onc group in Indianapolis. I have had excellent treatment, I think and began herceptin in July of 05 so they have stayed up to date but it is hard to change docs when you feel so dependent upon them to help you fight this thing. Berta
Berta is offline   Reply With Quote
Old 06-19-2006, 08:52 PM   #12
mamacze
Senior Member
 
mamacze's Avatar
 
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
Oh Stephanie,
You shine through your most recent set backs and now this. You must feel so frustrated that the one person you literally trust your life with is moving away.
You have a good head on your shoulders and you network well so I have no doubt that you already have some alternatives in mind. If push comes to shove, however, you may consider giving Nora Disis a call and get some thoughts from her. Good luck angel girl.
Love Kim from CT
mamacze is offline   Reply With Quote
Old 06-19-2006, 09:09 PM   #13
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Oh Steph - that is a bummer! You have been through SO much, and have been lucky enough to work with an entire team of wonderful doctors who know you, and who you trust - (literally) with your life. I lost my "wonderful" oncologist suddenly and unexpectedly - he died of a heart attack at age 42. I felt like an orphan. Tap into some recommendations from the rest of your "team" - and I like you taking the opportunity to discuss this with your onc who is leaving. This relationship is so much more than a simple doctor/patient one! Best of luck to you in finding another wonderful doctor - as I know you will!
Chris
chrisy is offline   Reply With Quote
Old 06-20-2006, 03:38 PM   #14
RobinP
Senior Member
 
RobinP's Avatar
 
Join Date: Nov 2005
Posts: 943
I am loosing my oncologist too soon and Iam on the hunt for a good new one in upstate NY.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
RobinP is offline   Reply With Quote
Old 06-20-2006, 05:56 PM   #15
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Epidemic??

Thanks, everyone for your thoughts and encouragement. Sorry some others are also seeking new docs - it IS the PITS.
I do have a little more info to go on now, as I have been nosing around a bit into the inner workings and other changes to come. Such as the Nurse Case Manager, Scheduler and other support staff to my med onc who is leaving. He has such a great team and I also know them all since the beginning.
The infusion suite nurses are great and they have also fed me a little info.

So, I am still sorting through the possibilities here. There is no question of changing treatment centers, though I could, as we have a couple of other good ones locally.

Will keep you posted.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 06-20-2006, 08:39 PM   #16
Demack
Junior Member
 
Join Date: Apr 2006
Location: TN
Posts: 4
Smile

Hi Steph,

I know how you feel. My Med Onconogist retired this month. He is wonderful and got me through the main part of my treatment. I am still on Herceptin every week, but he transferred me to a great someone he knew and trusted.
I really miss him. He was like having my own personal MD. He also adjusted my treatment plan just for me.
Good luck finding a new doctor. Trust the nurses and othe staff. They know a lot about the doctors and treatments,
Debbie
Demack is offline   Reply With Quote
Old 06-22-2006, 09:26 AM   #17
MCS
Senior Member
 
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
Dear Steph,


It's all about trust. I don't particularly like mine but he knows my case well and if he leaves, it would be starting again. I can understand your worries very well

I am also very afraid that my ob gyn might retire. He's a very good doc and has referred to many excellent places in the past so I'm ver worried that he will retire soon.


XOXO

MCS ( maria)
MCS is offline   Reply With Quote
Old 06-22-2006, 12:04 PM   #18
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Wink Problem solved

I wanted to let you know that I really appreciate your thoughts and support on this issue. As many have said, TRUST is such a biggie with our disease. The med onc I am losing is moving several states away, so not very accessible.

With the breast group at my cancer center is another top notch (and been around a while) woman onc who has agreed to take over my care. She takes very few new patients as she does a lot of research and goes to all the major breast cancer meetings to make presentations. But, she has a new nurse who I know from the infusion suite that I like a lot. The PA who I know through my 6 years is on extended maternity leave, but I hear the new one is very good.

A really great thing about this change is that my "new" med onc is the person who told me about this web site!!! She met Chris & Joe in San Antonio about a year after this site was launched. (She is a moving force behind Team Survivor Northwest and I had first contact with this doc in this relationship.) I have been here ever since ... H-e-e-l-l-o-o!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
StephN is offline   Reply With Quote
Old 06-23-2006, 04:42 AM   #19
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306
Wow! How great is that??? Very glad to hear you so positive about this turn of events. Who woulda' thunk!


xoxoxoxpattyz
pattyz is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:20 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter